I believe some angels visited Larry during the night. He woke up this morning with no edema-Yippee! His feet and legs were completely back to normal. So it was not caused by a blockage. Must have been from all the IV solutions he was given-?? He was definitely given an overnight gift.
Ok angels, keep up the good work!
Tuesday, July 31, 2012
Monday, July 30, 2012
Coping
Larry feels lost and out of touch. If these infections get under control he knows that the best thing will be for him to get to his office downtown. Right now though he is learning self care. This is all knew to him and he is not liking all the attention he has to give himself.
I believe that Larry may be up to some phone calls. Morning, after 9am is the best time. Please know that he may sound perfectly normal on the phone and does not admit to how he is really feeling. That is how he is coping with all this. While the nurse was here this morning, everything is fine, he is feeling great, has no pain, etc. Then the nurse sees his grimace and looks at me. I just nodded and spoke to her as she was leaving. If that is what he needs to do so that he can get through this, that is ok. I notice it all and am able to see how he really is.
I believe that Larry may be up to some phone calls. Morning, after 9am is the best time. Please know that he may sound perfectly normal on the phone and does not admit to how he is really feeling. That is how he is coping with all this. While the nurse was here this morning, everything is fine, he is feeling great, has no pain, etc. Then the nurse sees his grimace and looks at me. I just nodded and spoke to her as she was leaving. If that is what he needs to do so that he can get through this, that is ok. I notice it all and am able to see how he really is.
Sunday, July 29, 2012
FINDING A NEW ROUTINE
Larry is still very tired but we have planned to take a walk in the morning and evening every day. He has edema. His feet and bottom legs are 3 times the size they normally are. Going to contact a Dr(hmm which one?) tomorrow to get a script to get him fitted for compression stockings for his legs and feet. For some reason the lymph fluid is not flowing like it should. I know a lot about this from my own lymphadema. Yet everyone is different and will need to get more info for him. Darn, wish I had learned the lymph drain in HT.
When I had talked to the Dr's they told me this was normal. Obviously he has a blockage somewhere that is keeping the lymph from flowing the way it should. I will need a better explanation-here I go again.
I am kept very busy with everything that needs to be done. His med schedule is very complex. I prepared a list by time of day for every med, supplement etc. Otherwise we would both be confused. His daily antibiotic regimen also became much more complex.
I got a big surprise when the meds arrived 2 days ago with an IV pole. We both became a little nervous about that one! Giving him a shot of a med into his picc line is one thing, having to set up an IV, another. I was taught by the home health nurse how to give him a 30-40 minute IV infusion. Funny how you do what you need to. Not sure how I lost the nervousness but thankful I did.
Tomorrow Larry is going to make a chart of his walking, attempt at light weights, stretching and deep breathing exercises. Hopefully that will make him feel better. I asked him to do this for himself but it may be too soon to implement.
Since his computer got fried from our last storm, I will need to send our son out tomorrow to get a new CPU for him. It was very difficult today for him to try to grade the 60 essay and 40 problem homework assignments online. He has a 27" monitor, so it should be a little easier once he gets his own computer running. He calls my monitor scrawny.
He is continuing to lose weight. I am preparing shakes and smoothies but his tolerance is only about 4oz at a time. He seems to be eating better but as before, it is going right through. I do worry that he is not absorbing any nutrition. Today he was walking and his wedding ring fell right off of his finger. I will look for a chain so he can wear it around his neck. If anyone has any other ideas about this one please let me know.
Thanks again to everyone who has sent cards, messaged and called with encouragement. Love, Melody
When I had talked to the Dr's they told me this was normal. Obviously he has a blockage somewhere that is keeping the lymph from flowing the way it should. I will need a better explanation-here I go again.
I am kept very busy with everything that needs to be done. His med schedule is very complex. I prepared a list by time of day for every med, supplement etc. Otherwise we would both be confused. His daily antibiotic regimen also became much more complex.
I got a big surprise when the meds arrived 2 days ago with an IV pole. We both became a little nervous about that one! Giving him a shot of a med into his picc line is one thing, having to set up an IV, another. I was taught by the home health nurse how to give him a 30-40 minute IV infusion. Funny how you do what you need to. Not sure how I lost the nervousness but thankful I did.
Tomorrow Larry is going to make a chart of his walking, attempt at light weights, stretching and deep breathing exercises. Hopefully that will make him feel better. I asked him to do this for himself but it may be too soon to implement.
Since his computer got fried from our last storm, I will need to send our son out tomorrow to get a new CPU for him. It was very difficult today for him to try to grade the 60 essay and 40 problem homework assignments online. He has a 27" monitor, so it should be a little easier once he gets his own computer running. He calls my monitor scrawny.
He is continuing to lose weight. I am preparing shakes and smoothies but his tolerance is only about 4oz at a time. He seems to be eating better but as before, it is going right through. I do worry that he is not absorbing any nutrition. Today he was walking and his wedding ring fell right off of his finger. I will look for a chain so he can wear it around his neck. If anyone has any other ideas about this one please let me know.
Thanks again to everyone who has sent cards, messaged and called with encouragement. Love, Melody
Friday, July 27, 2012
Grieving & Togetherness
Today has been a day of intense grieving. Larry awoke with high anxiety and not being able to process what has occurred and what will happen. He(we) still cannot believe that he has terminal cancer. He has been trying so hard to fight off these infections that his cancer has been put to the side. He is grieving over:
-His fatigue
-His body not giving him a chance with the chemo
-His not being able to complete his summer school classes
-The possibly he is grading his last set of school papers.
-The possibility that his teaching days are done.
-Laura dropping her class again, her depression and not knowing if she can return to school in the fall.
-Larry not able to move forward in his life.
-Our future
I have given him permission to grieve as often as he needs to. He has given me permission to grieve as often as I need to. After a very tough week, we have again found our hugs of togetherness.
It is so very hard for all of us to find the fight, hope and determination of where we were 3 weeks ago. I know that it will come from me when I am able. There have been so many times in the past years that I no longer wanted to be that leader of moving everyone forward. This time I am more tired than ever but still feel that spark inside me. It will again reappear and with my change, hopefully as in the past, the rest of the family will follow.
-His fatigue
-His body not giving him a chance with the chemo
-His not being able to complete his summer school classes
-The possibly he is grading his last set of school papers.
-The possibility that his teaching days are done.
-Laura dropping her class again, her depression and not knowing if she can return to school in the fall.
-Larry not able to move forward in his life.
-Our future
I have given him permission to grieve as often as he needs to. He has given me permission to grieve as often as I need to. After a very tough week, we have again found our hugs of togetherness.
It is so very hard for all of us to find the fight, hope and determination of where we were 3 weeks ago. I know that it will come from me when I am able. There have been so many times in the past years that I no longer wanted to be that leader of moving everyone forward. This time I am more tired than ever but still feel that spark inside me. It will again reappear and with my change, hopefully as in the past, the rest of the family will follow.
Overwhelmed
I have not posted lately because I have felt completely overwhelmed with Dr's, nurses and educating myself about Larry's infections. I will write more on that later.
A big THANK YOU to my brother, Len for spending 4 days with us. He was a tremendous help to me. I also know that Larry was very thankful to have a conversation with someone that was not about his health issues. Len spent a great deal of time with Larry that then gave me a break to take care of bills, house stuff and medical issues with Larry Kyo and Laura.
Larry came home yesterday. I admit I was not ready for him to come home. I was scared of being able to handle his condition and the probability of our catching his infection. I was not happy that the doctors released him after only 3 days of antibiotic treatment. Yet he is so happy to be here with us that I am calming down and glad to see some peace in his face. This last occurence has taken so much out of him. He is weaker than I have ever seen him. We will work together to help him gain some strength and hopefully put back some of the 20# he has lost.
A big THANK YOU to my brother, Len for spending 4 days with us. He was a tremendous help to me. I also know that Larry was very thankful to have a conversation with someone that was not about his health issues. Len spent a great deal of time with Larry that then gave me a break to take care of bills, house stuff and medical issues with Larry Kyo and Laura.
Larry came home yesterday. I admit I was not ready for him to come home. I was scared of being able to handle his condition and the probability of our catching his infection. I was not happy that the doctors released him after only 3 days of antibiotic treatment. Yet he is so happy to be here with us that I am calming down and glad to see some peace in his face. This last occurence has taken so much out of him. He is weaker than I have ever seen him. We will work together to help him gain some strength and hopefully put back some of the 20# he has lost.
Monday, July 23, 2012
Are Infections Hospital Acquired or from the Chemo??
Larry now has 3 different infections. I want to take him out of the Hospital and find somewhere else for him to be treated. I have lost confidence with the Dr's and feel that these infections have gotten out of hand.
Larry does not want to move to another hospital. He told me to go home today. I do understand that he is tired of all the opposition. That is not his personality. Yet my comfort level is gone and that is not a good feeling to have. I have been voicing my concerns to the nurses and Dr's and asking if he is now contacting these infections from the hospital. I guess that someone became concerned about my statements.
His Oncologist called me tonight to tell me that he is 100% responsible for Larry's infections. He said that the the high dosage of chemotherapies made his system susceptible to the infections. I asked him why after 9 days he is just now saying the chemotherapy was the cause. He apologized to me for not making that clear from the beginning. I wish I had thought of asking him who requested that he make this call to me.
Larry does not want to move to another hospital. He told me to go home today. I do understand that he is tired of all the opposition. That is not his personality. Yet my comfort level is gone and that is not a good feeling to have. I have been voicing my concerns to the nurses and Dr's and asking if he is now contacting these infections from the hospital. I guess that someone became concerned about my statements.
His Oncologist called me tonight to tell me that he is 100% responsible for Larry's infections. He said that the the high dosage of chemotherapies made his system susceptible to the infections. I asked him why after 9 days he is just now saying the chemotherapy was the cause. He apologized to me for not making that clear from the beginning. I wish I had thought of asking him who requested that he make this call to me.
Sunday, July 22, 2012
Probiotic use with antibiotics
Larry has been very sick yesterday and this morning from the new antibiotic they have him on. He cannot keep any food down. Another Consult with the Infectious Disease Doc coming up.
Yesterday was very frustrating concerning the use of Probiotics. Antibiotics destroy the good bacteria in the gut. The Dr's know this. Why don't they automatically put their patients on a Probiotic? The US is the only country that does not do this. Two different Dr's would not approve its use even though Larry's oncologist did. Well, I went out this morning and bought PB8 for him. It is one of the best non-refrigerated brands. It is now sitting proudly on his tray table. When he gets home I will start him on Flora3 that needs to be kept in the fridge.
Even his nurses, who are from Europe it seems, cannot understand the Dr's fighting me on this. They told Larry to just take what I purchased. Why is everything I discuss with the Dr's a disagreement?
Yesterday was very frustrating concerning the use of Probiotics. Antibiotics destroy the good bacteria in the gut. The Dr's know this. Why don't they automatically put their patients on a Probiotic? The US is the only country that does not do this. Two different Dr's would not approve its use even though Larry's oncologist did. Well, I went out this morning and bought PB8 for him. It is one of the best non-refrigerated brands. It is now sitting proudly on his tray table. When he gets home I will start him on Flora3 that needs to be kept in the fridge.
Even his nurses, who are from Europe it seems, cannot understand the Dr's fighting me on this. They told Larry to just take what I purchased. Why is everything I discuss with the Dr's a disagreement?
Friday, July 20, 2012
A New Antibiotic
Another rigors attack and fever spike this afternoon while Laura was staying with him.
Laura is somehow distancing herself from it all. I do not understand how she is able to but I do know that everyone has there own way of handling crisis situations. She is going to her spot that she has found gives her comfort over the last 7 years. Ignoring everything is right for her at this time. I do not want to push her out of her own comfort zone. My son told me what he is not comfortable with and does not want to go to the hospital.
There is part of me that wants to say to them both that they need to step up and help me out. Yet I am so worried of the scars they will be adding to themselves having had to deal with so much cancer and death within the family. Some have said to me that it is part of life and they have to learn how to deal with it. As a Mother, I am always trying to protect them.
The Infectious Disease Docs are now trying a different antibiotic for Larry. He will be on this one for 2 weeks. This is now the 5th antibiotic they are trying in an attempt to stop the infection. At this time a decision was made not to do another endoscopy. They believe the peritoneum fluid build up and the liver abscess could create a more serious situation if an attempt is made to drain it. They are still hoping that they will find an antibiotic that works. He will probably return home again without answers as to where this is coming from.
I am crazed about the amount of time this is all taking. Larry does not have time on his side. He needs to get the chemo cocktail in him to try and slow down the cancer growth. Yet nothing can be done while this infection is going on. The irony here is that he ended up tolerating the chemo well. His blood counts are very good. His immune system bounced back as we thought it would. Why it is not fighting this infection is the question we are both asking.
Laura is somehow distancing herself from it all. I do not understand how she is able to but I do know that everyone has there own way of handling crisis situations. She is going to her spot that she has found gives her comfort over the last 7 years. Ignoring everything is right for her at this time. I do not want to push her out of her own comfort zone. My son told me what he is not comfortable with and does not want to go to the hospital.
There is part of me that wants to say to them both that they need to step up and help me out. Yet I am so worried of the scars they will be adding to themselves having had to deal with so much cancer and death within the family. Some have said to me that it is part of life and they have to learn how to deal with it. As a Mother, I am always trying to protect them.
The Infectious Disease Docs are now trying a different antibiotic for Larry. He will be on this one for 2 weeks. This is now the 5th antibiotic they are trying in an attempt to stop the infection. At this time a decision was made not to do another endoscopy. They believe the peritoneum fluid build up and the liver abscess could create a more serious situation if an attempt is made to drain it. They are still hoping that they will find an antibiotic that works. He will probably return home again without answers as to where this is coming from.
I am crazed about the amount of time this is all taking. Larry does not have time on his side. He needs to get the chemo cocktail in him to try and slow down the cancer growth. Yet nothing can be done while this infection is going on. The irony here is that he ended up tolerating the chemo well. His blood counts are very good. His immune system bounced back as we thought it would. Why it is not fighting this infection is the question we are both asking.
Horrible Night
Rigors Attack@ 1am followed by fever that I could not get down. Tylenol and ice, an hour later his fever was 104.5. With Larry's permission back to the Hospital ER.
I will not let them release him until they find the cause of this infection. Obviously the antibiotics he has had since Tuesday are not helping. We are both so exhausted and scared. I asked the ER Dr to give him something so he can sleep. The Dr sent me home so I could get a few hours. My mind is in overdrive and I cannot even lay down.
The hospital called me a half hour after I finally got to sleep to report that his fever was gone. I am so glad but how can it spike like that then be normal 4 hrs later? Maybe I should have waited it out but that high temp was scary. My mind is continually full of questions and having to make decisions while in a state of unsure.
Larry is part of my heart and soul. I will continue to support him and be his advocate in every way possible.
To those of you who tell me how strong I am, I am not. I am just a wife who is doing everything I can to help her husband.
I will not let them release him until they find the cause of this infection. Obviously the antibiotics he has had since Tuesday are not helping. We are both so exhausted and scared. I asked the ER Dr to give him something so he can sleep. The Dr sent me home so I could get a few hours. My mind is in overdrive and I cannot even lay down.
The hospital called me a half hour after I finally got to sleep to report that his fever was gone. I am so glad but how can it spike like that then be normal 4 hrs later? Maybe I should have waited it out but that high temp was scary. My mind is continually full of questions and having to make decisions while in a state of unsure.
Larry is part of my heart and soul. I will continue to support him and be his advocate in every way possible.
To those of you who tell me how strong I am, I am not. I am just a wife who is doing everything I can to help her husband.
Thursday, July 19, 2012
Home on Wed and Back on Thurs for test
Wednesday, 7/18/12: Larry is able to return home. He is very drained from not being able to sleep for 2 weeks. Hoping he gets to bed early and sleeps long.
5pm: Nurse arrives to teach me how to handle the antibiotic for his port. She stays 2 hours. The instructions are 2 pages long. Wasn't expecting so many steps. I am not nervous but Larry is. He keeps telling me not to forget to put my glasses on. Saline flush(why does it keep squirting on the ceiling?), alcohol wipes, Rocephin antibiotic injected for 10 minutes, Saline flush, Heparin injection. Tricky part are those air bubbles!
9:30pm: Electricity goes out. Yep, he has to get the generator out with Larry Kyo's help and show us how to plug in the fridge, freezer and a line in the family room for some fans. Very hot, muggy and again no sleep.
Thursday, 7/19/12: We awake and still no electricity. Wondering if we will need to check into a hotel.
Larry finds that his feet and legs are painful. Check and see that he is very swollen. Call the Dr to find out what to do. His nurse returns my phone call in 10 minutes. Back to the hospital to have a doppler test to make sure he does not have any blood clots. No clots, thankfully.
Electricity comes back on and the day starts to look better. Then he notices that his computer will not turn on. Didn't the surge protector work? We had this happen once before during a lightning strike. He needs access to his computer to keep in touch with his students.
After a late lunch I notice that Larry is breathing very shallow and through his mouth. He gets mad at me for noticing every "little" thing. I don't believe it is little and call the Dr's office again. She wants him to first take his anti-anxiety med and calls in a script for sleeping. Tells me to call Friday around 1pm to see if his breathing is better. Anxiety can cause shallow breathing which I know too well. Yet I worry about this blood infection he has. Note to everyone, he does not have strep throat and is not contagious. His infection is a different strain of streptoccoccus.
We hope for a better nights sleep and an uneventful Friday.
5pm: Nurse arrives to teach me how to handle the antibiotic for his port. She stays 2 hours. The instructions are 2 pages long. Wasn't expecting so many steps. I am not nervous but Larry is. He keeps telling me not to forget to put my glasses on. Saline flush(why does it keep squirting on the ceiling?), alcohol wipes, Rocephin antibiotic injected for 10 minutes, Saline flush, Heparin injection. Tricky part are those air bubbles!
9:30pm: Electricity goes out. Yep, he has to get the generator out with Larry Kyo's help and show us how to plug in the fridge, freezer and a line in the family room for some fans. Very hot, muggy and again no sleep.
Thursday, 7/19/12: We awake and still no electricity. Wondering if we will need to check into a hotel.
Larry finds that his feet and legs are painful. Check and see that he is very swollen. Call the Dr to find out what to do. His nurse returns my phone call in 10 minutes. Back to the hospital to have a doppler test to make sure he does not have any blood clots. No clots, thankfully.
Electricity comes back on and the day starts to look better. Then he notices that his computer will not turn on. Didn't the surge protector work? We had this happen once before during a lightning strike. He needs access to his computer to keep in touch with his students.
After a late lunch I notice that Larry is breathing very shallow and through his mouth. He gets mad at me for noticing every "little" thing. I don't believe it is little and call the Dr's office again. She wants him to first take his anti-anxiety med and calls in a script for sleeping. Tells me to call Friday around 1pm to see if his breathing is better. Anxiety can cause shallow breathing which I know too well. Yet I worry about this blood infection he has. Note to everyone, he does not have strep throat and is not contagious. His infection is a different strain of streptoccoccus.
We hope for a better nights sleep and an uneventful Friday.
Wednesday, July 18, 2012
Another Rigors Attack and Fever
UPDATE: As of 9am he told the Dr he wants to just come home.The Hospitalist Dr. signed his release papers. I of course want to speak to all the Dr's again as to what the next step is. Yet I'm not going to since Larry just wants to be at home.
1am: After 30 hours of feeling better, no fevers and clean blood cultures, Larry had another rigors attack and 103 fever early this morning. This of course means the sepsis is not under control as they thought. They may now have to do another endoscopy to see if there is an abscess causing the infection. They may remove the port. They may have to go in and look closer at his heart. His stress level is over the top as is mine.
"Ok God, he needs a break here. Please guide the Doctors to the cause of infection so that he may resume his treatment. With this diagnosis of Pancreatic Cancer he knows his time is limited. He is just asking for another two years so that he can see his son settled and be up on stage as his daughter graduates from Loyola. Amen."
1am: After 30 hours of feeling better, no fevers and clean blood cultures, Larry had another rigors attack and 103 fever early this morning. This of course means the sepsis is not under control as they thought. They may now have to do another endoscopy to see if there is an abscess causing the infection. They may remove the port. They may have to go in and look closer at his heart. His stress level is over the top as is mine.
"Ok God, he needs a break here. Please guide the Doctors to the cause of infection so that he may resume his treatment. With this diagnosis of Pancreatic Cancer he knows his time is limited. He is just asking for another two years so that he can see his son settled and be up on stage as his daughter graduates from Loyola. Amen."
Tuesday, July 17, 2012
Viridans Streptococcus milleri
All test results came back today. An infectious disease Dr. came to talk to us. Larry's oncologist called me, finally. His infection was caused by Viridans Streptococcus milleri. This is another bacteria that is becoming more antibiotic resistant. There still is no definite source of infection. The concensus among the doctors is that it started in his GI tract somewhere.
His heart ultrasound came back with no evidence of endocarditis. If the infection returns they will have to do a procedure to look further into the heart to make sure that no infection is present.
All the blood cultures taken of the port line showed no infection present. They will not have to remove the port. We breathed a sigh of relief on this one.
Last 2 blood cultures taken from his arm were clear so it looks like they were able to get the sepsis under control. Larry will go home with an antibiotic. A nurse will come to our house to teach me how to administer it into his port line. The infusion should take about 15 minutes a day. He will be on this regimen for 12 days.
His oncologist warned me that this infection could reoccur at any time. If it does, Larry said he will have to reaccess everything. We are praying that God will give him a break and allow this chemo to do its job against the cancer cells. He is scheduled to have the 2nd round of chemo in 2 weeks as long as his blood counts are good and his cultures continue to come back negative.
We are hoping that the remaining week is uneventful. A few days of boring will be good.
We want to thank everyone for their phone calls, prayers and concern. Love to All.
His heart ultrasound came back with no evidence of endocarditis. If the infection returns they will have to do a procedure to look further into the heart to make sure that no infection is present.
All the blood cultures taken of the port line showed no infection present. They will not have to remove the port. We breathed a sigh of relief on this one.
Last 2 blood cultures taken from his arm were clear so it looks like they were able to get the sepsis under control. Larry will go home with an antibiotic. A nurse will come to our house to teach me how to administer it into his port line. The infusion should take about 15 minutes a day. He will be on this regimen for 12 days.
His oncologist warned me that this infection could reoccur at any time. If it does, Larry said he will have to reaccess everything. We are praying that God will give him a break and allow this chemo to do its job against the cancer cells. He is scheduled to have the 2nd round of chemo in 2 weeks as long as his blood counts are good and his cultures continue to come back negative.
We are hoping that the remaining week is uneventful. A few days of boring will be good.
We want to thank everyone for their phone calls, prayers and concern. Love to All.
HOSPITALIST RANT
Why isn't Larry's oncologist calling me back? Why is the Dr who visited Larry on Sat and Sun still here on Monday? Why is she making medical decisions WITHOUT talking to his oncologist? Who are these Dr's who keep visiting Larry with all these very scary assumptions? What the hell is a HOSPITALIST DR????
I must have asked that last question a dozen times over the last few days, attempting to understand. It was as if my mind could not accept this new method of medical care for patients in a hospital. This morning I called the other area hospitals to see if they had the same practice. Has the medical community gone mad or have I.
Primary care doctors, your family Dr, or your Oncologist, Cardiologist, no longer make patient rounds if you are in the hospital. The medical community has now decided that Dr's are overwhelmed with the number of patients they have, so are easing their load by taking away contact with their patients who are hospitalized.
They now employ Independent Hospitalists who handle in patient care. North Shore University Systems has an all online medical history system, so a Dr. who knows nothing about you can read your history.
Now, my reaction here is very personal, since the last 3 1/2 days have been hell. Yet when I cannot get Larry's Dr to return my call that means there is a big problem. I know where he is today and I am very close to deciding if I should stop by his oncology dept and request an immediate consult.
The Hospitalist Dr who is handling Larry's case is very nice, but that is not the person we chose as our Dr. I do not know anything about this Dr. She is not listed on their website of Dr's. When she starts making decisions that effect his health, like deciding which antibiotics he should be receiving by IV drip or choosing to eliminate one of them, my anxiety level reaches an unhealthy level. I then have to immediately access what is happening and dig deep as to what questions have to be asked. Is my voice calm, no. Am I being as nice as she is, no. Am I stressing my hubby out more, a big yes!
This situation has changed my confidence in North Shore being able to give Larry the quality of care that he needs. Damn, we do not need this feeling of loss of confidence at this time!
I must have asked that last question a dozen times over the last few days, attempting to understand. It was as if my mind could not accept this new method of medical care for patients in a hospital. This morning I called the other area hospitals to see if they had the same practice. Has the medical community gone mad or have I.
Primary care doctors, your family Dr, or your Oncologist, Cardiologist, no longer make patient rounds if you are in the hospital. The medical community has now decided that Dr's are overwhelmed with the number of patients they have, so are easing their load by taking away contact with their patients who are hospitalized.
They now employ Independent Hospitalists who handle in patient care. North Shore University Systems has an all online medical history system, so a Dr. who knows nothing about you can read your history.
Now, my reaction here is very personal, since the last 3 1/2 days have been hell. Yet when I cannot get Larry's Dr to return my call that means there is a big problem. I know where he is today and I am very close to deciding if I should stop by his oncology dept and request an immediate consult.
The Hospitalist Dr who is handling Larry's case is very nice, but that is not the person we chose as our Dr. I do not know anything about this Dr. She is not listed on their website of Dr's. When she starts making decisions that effect his health, like deciding which antibiotics he should be receiving by IV drip or choosing to eliminate one of them, my anxiety level reaches an unhealthy level. I then have to immediately access what is happening and dig deep as to what questions have to be asked. Is my voice calm, no. Am I being as nice as she is, no. Am I stressing my hubby out more, a big yes!
This situation has changed my confidence in North Shore being able to give Larry the quality of care that he needs. Damn, we do not need this feeling of loss of confidence at this time!
Monday, July 16, 2012
Shake and Bake
Not my title-that is what Larry is calling himself. Yes, he is still having rigors. Prior post was wrong. He had gone 12 hours not 24 without one. Just after I had posted that yesterday, he had another one. They are now giving him a shot of demerol as soon as it starts. It shortens the episode a bit but not the intensity.
Getting wonderful results talking to the oncologist on call. Still lots of problems with the hospital Dr on call. Glenbrook is not a teaching hospital(Evanston is) so there is not a Dr in the ward. Oncologist told me that there are 3 possibilites of site infections that would have caused the sepsis. The skin through the port. His liver/bile duct. His colon. They did a CT scan at 8pm last night.
I came home last night, have gotten 5hrs of sleep which is the longest amount in a while.
Hoping to talk to Larry's oncologist today and find out results of CT.
How is it even possible that just 5 months ago we were dealing with his sister, Nancy, having sepsis??
Getting wonderful results talking to the oncologist on call. Still lots of problems with the hospital Dr on call. Glenbrook is not a teaching hospital(Evanston is) so there is not a Dr in the ward. Oncologist told me that there are 3 possibilites of site infections that would have caused the sepsis. The skin through the port. His liver/bile duct. His colon. They did a CT scan at 8pm last night.
I came home last night, have gotten 5hrs of sleep which is the longest amount in a while.
Hoping to talk to Larry's oncologist today and find out results of CT.
How is it even possible that just 5 months ago we were dealing with his sister, Nancy, having sepsis??
Sunday, July 15, 2012
7/15/12@4pm
Larry had his highest fever yet at 103.6 early this morning with another rigors attack.
He has now gone 24 hours without another rigors episode or fever spike. I hope this means that the antibiotics are working. We are praying that they are able to get the sepsis under control. Hoping to talk to his oncologist tomorrow morning. I want them to do a scan to determine if the bile duct is blocked and what has caused this sepsis.
He has now gone 24 hours without another rigors episode or fever spike. I hope this means that the antibiotics are working. We are praying that they are able to get the sepsis under control. Hoping to talk to his oncologist tomorrow morning. I want them to do a scan to determine if the bile duct is blocked and what has caused this sepsis.
Sepsis
Sadly Larry is struggling with high fevers and rigors attacks. His Dr. called me at midnight at the hospital. He explained that he believes Larry has a sepsis infection of the bile duct. They put him on 3 different IV's of very strong antibiotics. He has received 4 IV bags of sodium chloride today with little urine output.
I am staying at the hospital with him. They brought me a mini bed to sleep on. Again, no sleeping tonight.
Saturday, July 14, 2012
ER TRIP #1
Thought I had Larry's fever under control. Gave him tylenol at 1am for his 100.3 temp. Went to sleep then checked on him at 4:30. Fever up to 102.7! Contacted the Dr on call because I could not find his Dr's number for some reason. (Note to self, put it on the fridge and in my wallet.)
He is now getting an IV fluid for his dehydration and resting comfortably. Dehydration occured quickly with that fever spike. Glenbrook Hospital will be keeping him for the day to monitor him. They took blood cultures and running blood tests.
Larry is mad that he had this reaction after the first treatment. We do not know what this means until we talk directly with his Dr. Since he gave him the highest dose of chemo's will he have to adjust the dose of the drugs? Will this be a normal response for Larry? Which chemo caused the fever or was it the neulasta shot? Maybe it wasn't the chemo, did he get a bacterial or viral infection? Yikes!
How should I respond? Call the Dr each time during the mid of the night. Not call the Dr and just get him to ER? Which ER should I take him to-his Dr. is primarily out of Highland Park Hospital but Glenbrook is much closer to us. At what temperature point? When it spikes or after the tylenol brings it down?
I am the type of person that is most comfortable with as much info ahead of things happening. Yet how do I even know what the questions should be when it is impossible to know what reactions his body will have?
Luckily, I am able to stay calm during the storms. After, is another matter.
He is now getting an IV fluid for his dehydration and resting comfortably. Dehydration occured quickly with that fever spike. Glenbrook Hospital will be keeping him for the day to monitor him. They took blood cultures and running blood tests.
Larry is mad that he had this reaction after the first treatment. We do not know what this means until we talk directly with his Dr. Since he gave him the highest dose of chemo's will he have to adjust the dose of the drugs? Will this be a normal response for Larry? Which chemo caused the fever or was it the neulasta shot? Maybe it wasn't the chemo, did he get a bacterial or viral infection? Yikes!
How should I respond? Call the Dr each time during the mid of the night. Not call the Dr and just get him to ER? Which ER should I take him to-his Dr. is primarily out of Highland Park Hospital but Glenbrook is much closer to us. At what temperature point? When it spikes or after the tylenol brings it down?
I am the type of person that is most comfortable with as much info ahead of things happening. Yet how do I even know what the questions should be when it is impossible to know what reactions his body will have?
Luckily, I am able to stay calm during the storms. After, is another matter.
Friday, July 13, 2012
Aftereffects of Chemo, Steroid and Neulasta
When I give Larry an HT session, I usually spend a lot of time with his stomach/pancreas/liver-yes I had to look it up to find out where each is located. I Hold my hands there and send love to the area. This time it felt like jumping beans were in his stomach. Never felt anything like that before. Was only able to get it about 50% calmed down. He visualizes that it was bombs going off in his stomach attacking the cancer cells. Run by the Navy Seals of course!
Since Larry does not get sick he has had a difficult time even describing what is going on in his body. Hiccups were main problem while going through treatment. Hiccups became so intense that he was in a lot of pain. He was not able to sleep for 3 nights because they were consistent through the evening also. Meds began to help after 24 hours. We were told that the hiccups were from the steroid not the chemo.
When he went in Wednesday to get his 5FU disconnected, we found out that he will be receiving a shot of Neulasta to keep his white blood cell count up. Well, that was a surprise. I don't understand why they just cannot keep a list of what meds he will have and give it to me. I am sure there will be many surprises around the corner so when one can be prevented.....Another call requesting that this be added to the regimen so patients have all the info. I know the Dr's nurse probably groans everytime she sees a message from me.
Larry was however, able to teach yesterday and was at Loyola for his normal 14 hour summer day schedule. Suggested he go in later in the day but he wanted to see if he could handle it. And he did handle it well joking with his students that his hair may be falling to the floor while in the classroom.
Today, Friday, he does not feel good. Besides all the muscles in his stomach hurting from the hiccups he has "what the hell hit me" fatigue and is also experiencing nausea. This may also be from the shot he received rather than the chemo. Later today he started to run a fever that I will be watching through the night. Neulasta could end up being his biggest friend that has an evil side.
Larry is always apologizing to me. My response is that I would not want to be anywhere else except by his side. His journey is my journey.
Since Larry does not get sick he has had a difficult time even describing what is going on in his body. Hiccups were main problem while going through treatment. Hiccups became so intense that he was in a lot of pain. He was not able to sleep for 3 nights because they were consistent through the evening also. Meds began to help after 24 hours. We were told that the hiccups were from the steroid not the chemo.
When he went in Wednesday to get his 5FU disconnected, we found out that he will be receiving a shot of Neulasta to keep his white blood cell count up. Well, that was a surprise. I don't understand why they just cannot keep a list of what meds he will have and give it to me. I am sure there will be many surprises around the corner so when one can be prevented.....Another call requesting that this be added to the regimen so patients have all the info. I know the Dr's nurse probably groans everytime she sees a message from me.
Larry was however, able to teach yesterday and was at Loyola for his normal 14 hour summer day schedule. Suggested he go in later in the day but he wanted to see if he could handle it. And he did handle it well joking with his students that his hair may be falling to the floor while in the classroom.
Today, Friday, he does not feel good. Besides all the muscles in his stomach hurting from the hiccups he has "what the hell hit me" fatigue and is also experiencing nausea. This may also be from the shot he received rather than the chemo. Later today he started to run a fever that I will be watching through the night. Neulasta could end up being his biggest friend that has an evil side.
Larry is always apologizing to me. My response is that I would not want to be anywhere else except by his side. His journey is my journey.
Tuesday, July 10, 2012
Thank You!
Larry and I would like to thank everyone who has called, emailed, sent cards and prayed. We feel your Prayers and Love. It is so very helpful to Larry, knowing that he is being thought of in such a wonderful way.
A special thank you to Phyllis and Gretchen, for providing Healing Touch. Also to Holly and Marcia for taking the time to give us a treatment. Larry is relaxing and absorbing HT in a very positive way. Also, a thank you to Holly and Gretchen for all the research they did on aromatherapy oils. I cannot believe what I have learned from you. Lastly, to Ellie, for sending me a box of Chakra Stones. All of you jumped right in and have helped us tremendously.
Please know that we are doing OK, just very tired all the time. We are hoping that we can now slow down and have a routine for the next few weeks. Again, many Thanks to everyone.
Love and Blessings to All!
Melody and Larry
A special thank you to Phyllis and Gretchen, for providing Healing Touch. Also to Holly and Marcia for taking the time to give us a treatment. Larry is relaxing and absorbing HT in a very positive way. Also, a thank you to Holly and Gretchen for all the research they did on aromatherapy oils. I cannot believe what I have learned from you. Lastly, to Ellie, for sending me a box of Chakra Stones. All of you jumped right in and have helped us tremendously.
Please know that we are doing OK, just very tired all the time. We are hoping that we can now slow down and have a routine for the next few weeks. Again, many Thanks to everyone.
Love and Blessings to All!
Melody and Larry
STARTING CHEMOTHERAPY
It was a very long stressful day since we did not know what to expect and how everything works. Turns out they had a chemo teaching orientation that was on the night that Larry teaches so we went in not knowing anything. Why someone(including myself) did not think to just have me attend, I don't know.
Throughout the day, I felt that I could not step out of the room at anytime or I would miss a piece of important information. It was information overload! We met with the doctor and his nurse, the chemo nurse, a nurse practioner and the pharmacist.
Larry was told that he could get a script for medicinal marijuana. Did not know that was an option in Illinois.
He has a very strong opinion over the fact that many people are killed over the growing of marijuana and said he would not take it no matter how sick he may get. The nurse seemed surprised at his reaction and did not respond.
It took a lot of time to get the results of the blood work and infuse the prep IV drips. Larry was first given glucose, a IV drug to help with nausea and Leukovorin. Leukovorin is not a chemo but enhances the 5FU chemo. The actual chemo infusion started 2 1/2 hours after we were brought into a private room. The chemo consisted of 3 drugs, Irinotecan, Oxaliplatin and 5FU. I was surprised at how large the bags were and how fast they dripped for 2 hrs. For some reason I wanted to slow it down, I guess my own fears coming forward.
I said a Prayer over the chemo bags as it started. Holding the chemo bags in my hands, "God please Bless these chemo drugs and allow them to go where it is needed in Larry's body. Please have it remove the cancer cells and keep his healthy cells from absorbing the chemo. God thank you for having this medicine available to Larry" Larry then did a visualization of the treatment outcome being positive and an affirmation of being healed.
When completed he then was hooked up to a new infusion of 5FU that he would go home with. It is inside a balloon, in a plastic container, that is stored in a fanny bag around his waist. He will have that disconnected in 2 days. 12 days later the 2nd chemo treatment will begin.
24 hrs later his only side effect has been hiccups and loose stools. We were told major side effects will hit on day 3-4. We are hoping that he will be able to teach Wed/Thurs evening.
Throughout the day, I felt that I could not step out of the room at anytime or I would miss a piece of important information. It was information overload! We met with the doctor and his nurse, the chemo nurse, a nurse practioner and the pharmacist.
Larry was told that he could get a script for medicinal marijuana. Did not know that was an option in Illinois.
He has a very strong opinion over the fact that many people are killed over the growing of marijuana and said he would not take it no matter how sick he may get. The nurse seemed surprised at his reaction and did not respond.
It took a lot of time to get the results of the blood work and infuse the prep IV drips. Larry was first given glucose, a IV drug to help with nausea and Leukovorin. Leukovorin is not a chemo but enhances the 5FU chemo. The actual chemo infusion started 2 1/2 hours after we were brought into a private room. The chemo consisted of 3 drugs, Irinotecan, Oxaliplatin and 5FU. I was surprised at how large the bags were and how fast they dripped for 2 hrs. For some reason I wanted to slow it down, I guess my own fears coming forward.
I said a Prayer over the chemo bags as it started. Holding the chemo bags in my hands, "God please Bless these chemo drugs and allow them to go where it is needed in Larry's body. Please have it remove the cancer cells and keep his healthy cells from absorbing the chemo. God thank you for having this medicine available to Larry" Larry then did a visualization of the treatment outcome being positive and an affirmation of being healed.
When completed he then was hooked up to a new infusion of 5FU that he would go home with. It is inside a balloon, in a plastic container, that is stored in a fanny bag around his waist. He will have that disconnected in 2 days. 12 days later the 2nd chemo treatment will begin.
24 hrs later his only side effect has been hiccups and loose stools. We were told major side effects will hit on day 3-4. We are hoping that he will be able to teach Wed/Thurs evening.
Friday, July 6, 2012
Questions for the Doctor on Monday??
Larry has taught 4 days this week. He also teaches 4 classes of Executive MBA this month. One reason why he wanted to wait to begin the chemo on Monday. He will then have only 1 class left of EMBA and 6 classes of regular summer school left.
He is trying to be upbeat about the start of the chemo Monday but we are really fearful of the side effects. Yet hoping that he will be one of the few who have little problem with side effects.
Larry had a problem this week with his stomach that had us both believing symptoms were starting up. He went off all the supplements I bought for him and quit the digestive enzymes the Dr ordered.
He now feels back to normal:) Even though we started one at a time every 3 days something in the bunch did not agree with him. Just don't know which one or combination.
He will begin the Glutamine tomorrow and just stay on that one through the chemo week. We will then look at the others and may begin again. We were told to expect to be at the hospital for 8hrs Monday. Our backpack will be full.
I have another list of questions for the doctor:
-Emla Cream or ethyl chloride script to use on the port to ease the pain?
-Script for Magic Mouthwash to prevent mouth sores.
-Do they prescribe Ritalin for the fatigue?
-What can be done at the port site to prevent a staph infection? I want extra precautions taken with this since we have encountered this twice in the last few years.
-Do they subscribe Lovenox to prevent blood clots?
-What is the protocol for the likely side effect of diarrhea?
-Are they doing Caris testing for a marker? Wish I had this info earlier when we were consulting doctors.
Well I hope everyone had a wonderful 4th of July. Love.
Melody
He is trying to be upbeat about the start of the chemo Monday but we are really fearful of the side effects. Yet hoping that he will be one of the few who have little problem with side effects.
Larry had a problem this week with his stomach that had us both believing symptoms were starting up. He went off all the supplements I bought for him and quit the digestive enzymes the Dr ordered.
He now feels back to normal:) Even though we started one at a time every 3 days something in the bunch did not agree with him. Just don't know which one or combination.
He will begin the Glutamine tomorrow and just stay on that one through the chemo week. We will then look at the others and may begin again. We were told to expect to be at the hospital for 8hrs Monday. Our backpack will be full.
I have another list of questions for the doctor:
-Emla Cream or ethyl chloride script to use on the port to ease the pain?
-Script for Magic Mouthwash to prevent mouth sores.
-Do they prescribe Ritalin for the fatigue?
-What can be done at the port site to prevent a staph infection? I want extra precautions taken with this since we have encountered this twice in the last few years.
-Do they subscribe Lovenox to prevent blood clots?
-What is the protocol for the likely side effect of diarrhea?
-Are they doing Caris testing for a marker? Wish I had this info earlier when we were consulting doctors.
Well I hope everyone had a wonderful 4th of July. Love.
Melody
Tuesday, July 3, 2012
Beginning of the Month
We just experienced our first realization that we are reaching the "one month point". We have both said that we refuse to have a countdown of how many month's left per what we are told and read. Each person diagnosed is different and Larry does not need to be a part of their statistics. However, we found out that it was impossible not to feel more sad and more nervous as the first of July occurred.
We are still trying to be optimistic. Our counselor today at the Cancer Wellness Place pointed out to be careful. She said that positive thinking and optimism are important but it is like a bowl full of water. If you push the other feelings down under eventually that bowl of water is going to spill over and you could find yourself back at day one again. She suggested setting aside time to let out the other emotions.
Sorry, my emotions are not on a timer. They appear when I least expect them to. Like shopping in a grocery store and crying over the veggies I am picking out. Or having a fight with the garden hose and stomping it with my foot for 2 minutes.
Her suggestion may work better for Larry, though. We are very different when it comes to where we are emotionally at any given time. It is still evolving. There will never be a normal again because each day we awake with not knowing how the day will go but praying that it will be ok. Ok is now good.
We are still trying to be optimistic. Our counselor today at the Cancer Wellness Place pointed out to be careful. She said that positive thinking and optimism are important but it is like a bowl full of water. If you push the other feelings down under eventually that bowl of water is going to spill over and you could find yourself back at day one again. She suggested setting aside time to let out the other emotions.
Sorry, my emotions are not on a timer. They appear when I least expect them to. Like shopping in a grocery store and crying over the veggies I am picking out. Or having a fight with the garden hose and stomping it with my foot for 2 minutes.
Her suggestion may work better for Larry, though. We are very different when it comes to where we are emotionally at any given time. It is still evolving. There will never be a normal again because each day we awake with not knowing how the day will go but praying that it will be ok. Ok is now good.
Monday, July 2, 2012
The Power Port Goes In....
This was tough for both Larry and I. Partly because I had decided not to do the chemo with my BC 3 yrs ago. We felt that we had bypassed a lot with my decision. Yet here we are back in the same situation but this time it is so much more serious and Larry's only chance for a remission.
I did however know a lot about ports. Made sure they were using the Power Port so that it will be easier for him during his cat scans. Asked around about the radiologists and who had the best experience with installing the ports. I am not shy in trying to get him the best of care.
Larry did opt out of the sedative, having just a local. I told him it was ok to get sedated. I would have. Yet he did not want to be drowsy and wanted to go home and grade papers-again looking out for someone else, this time his students.
The procedure went well and he had no pain. Hoping the no pain will continue over the week. Nurses, Doctor, staff were all wonderful.
I believe in angels and guardians. I asked his angels to go ahead of us and bless the surgical room and assist everyone in it so that it would go smoothly. They did a great job:)
Thanks, Phyllis for teaching me about angels.
I did however know a lot about ports. Made sure they were using the Power Port so that it will be easier for him during his cat scans. Asked around about the radiologists and who had the best experience with installing the ports. I am not shy in trying to get him the best of care.
Larry did opt out of the sedative, having just a local. I told him it was ok to get sedated. I would have. Yet he did not want to be drowsy and wanted to go home and grade papers-again looking out for someone else, this time his students.
The procedure went well and he had no pain. Hoping the no pain will continue over the week. Nurses, Doctor, staff were all wonderful.
I believe in angels and guardians. I asked his angels to go ahead of us and bless the surgical room and assist everyone in it so that it would go smoothly. They did a great job:)
Thanks, Phyllis for teaching me about angels.
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